Someone told me recently what happened a few years ago when he moved his mother (I’ll call her Beatrice) into an assisted care facility because her Alzheimers was worsening. It happened in the summer of 2012, during the Olympics, and the facility’s televisions were all set to the channel covering the event. Seeing all the British flags and images of Big Ben, and hearing the British accents gave his mother the notion that her children were taking her on a family vacation to London.
Naturally enough, the children were initially flummoxed by her delusion, recognizing it as just one more reminder of her decline. At first they tried to disabuse Beatrice of her fantasy. But over the course of a few exhausting days, with all the packing and paper signing, they began to back down. Soon enough, Beatrice’s children and grandchildren were playing along:
“Honey, do you think tomorrow we can go to that big castle?” Beatrice asked. “The one with the queen? And we can watch those men in the big bear hats change their hats?”
“Oh, Mom, you mean the Changing of the Guard at Buckingham Palace? That sounds like a great idea. Let’s see what the weather’s like, though. It’s very fickle here in London.”
At first, they played into this fantasy with reluctance. After all, they were, technically speaking, lying to their mother. They worried that feeding her imaginings, rather than pulling her back to reality, would worsen her dementia. But with every new reference to London and how great it was to be there, the harder it became for them to break out of this game. For one thing, being “in London” seemed to please Beatrice. She moved into her new home with far less anxiety than her kids had expected, her new surroundings striking her as exotic and quaint rather than threatening and disorienting. What’s more, it was all kind of fun for the rest of them. An afternoon cup of Lipton and a muffin became “high tea”; the generic “real” landscape out the window became “a view of an English garden.”
Were they lying to her? Call it what you will, playing along made their mother’s transition to her new residence — with all its potential for stirring up conflict, anguish, and grief — more bearable. Despite the artifice—or rather, because of it—they felt closer to one another than they otherwise might have.
It needs to be said that Beatrice and her family were luck, inasmuch as the delusion she found herself in was a pleasant one. For many, dementia opens floodgates to paranoia, often rooted in early traumas. I once worked in a nursing home memory-care unit where there was a woman—“Esther”— a Shoah survivor, who spent most of her day standing at the threshold of her room and screaming at passers-by in a word-salad of Romanian, Yiddish, and German. One day, I happened to catch her at a moment of calm. I approached her and asked her to tell me about her screaming and why she wasn’t doing it right then. She said, “Most days I wake up, but I’m not really awake. I’m dreaming that I’m still in the hole in the ground where I hid for two years. Today, I just woke up regular.”
Esther’s delusions were as different from Beatrice’s as a concentration camp is from Piccadilly Circus. But the two women have something in common: they were experiencing what they were experiencing, and no one would have been able to convince them otherwise.
So what to do for Esther? Is there a way to enter into her experience with her in a way that will be soothing to her—the equivalent, I suppose, of meeting Beatrice for high tea? I think that there might be.
On Esther’s floor there was another woman, “Barbara.” Once, as I was walking through her corridor, she called to me:
“Doctor!” Barbara said. “Something is wrong with my hands. There’s a weakness in my hands. I can’t handle them. I can’t handle the children. The children are getting out of hand, and my hands don’t work. I can’t handle it. I can’t handle them with my hands.”
It’s easy to infer that Barbara was struggling with all kinds of anxiety and grief centered around her family: maybe loss of contact with her children, resurgent memories of feelings of inadequacy as a mother, plain old parental worry. Had Barbara been a bad mother? Had her children been particularly difficult? Did she really have something physical wrong with her hands? Irrespective of what at that moment was documentable or diagnosable, through a free-associative process Barbara’s cares and regrets had manifested themselves in her hands.
I’m not a doctor. But I am a preacher. The idea came into my head: why not try a faith healing?
“Barbara,” I said. “May I hold your hands?”
“Yes, please. I can’t handle them.”
I took her hands in mine. “I feel the pain in your hands. Do you feel the warmth in my hands. Do you feel it?”
“That’s the worry coming out of your hands. That’s the love coming from your children into your hands. Your hands can hold the children. You can handle them. Your children are warm when you hold them. I want the warmth of my hands to take care of you, so that you can handle the children.”
As I slowly withdrew my hands from hers, she said, “Thank you, doctor. My hands feel better.”
I don’t believe in faith healing in any literal way; I don’t pretend that I ‘cured’ Barbara of arthritis or psoriasis. Nor do I really think I imparted to her any lasting insight into her relationship with her children. But by playing along —as doctor, as preacher, it doesn’t really matter which—I helped her get through a moment of anxiety. And I’m certain that I did so more effectively than I might have had I tried to convince her that nothing was wrong with her hands or her kids.
Playing along with a person with dementia, suspending disbelief and stepping into their world, can be difficult. It goes against the grain of common sense. Our love of fact is deeply engrained.
A four-year-old asks: Is this story true? What she mean is, is it factual? She asks this question again and again because she is undergoing the developmentally necessary process or sorting out what’s imaginary from what’s real, so that she can make her way in the world. But an adult who is unable to put aside symbolic, imaginary thinking and move instead to thinking based on reason and consensus can justifiably be called psychotic.
But we also have to consider the other extreme. Suppose Dad says it’s Thursday, but I know it’s really Wednesday. I stick to my guns and keep trying, argument after argument, to bring him back to reality. At the end of my visit, what have I accomplished? We’re both angry. And the minute I leave the room, it will be Thursday again for Dad. And the next time I visit, the residual feelings will from this past visit will hover over us. People with dementia are generally quicker to forget facts than feelings.
On the other hand, ‘playing along’ means imagining what it’s like to be that other person, right now, where they are. In a word, empathy. ‘Going’ to London with Beatrice, strengthening Barbara’s ‘weak’ hands, or even ‘hiding’ in the hole with Esther (as, I regret, I never thought to do), is about as close as one can get to walking in the other’s shoes.
Sanford Meisner, one of the pioneers of the dramatic technique known as method acting, wrote that actors in their roles are not liars, but rather people “living truthfully under imaginary circumstances.” Implicit in this assertion is the truth that ‘truth’ claims territory not merely in the realm of fact, but also in the realms of trust and intention.
Next month I’ll talk in more depth about what the theater arts have to offer the dementia caregiver. I’ll bring you a fascinating article about two “improv” comedians who inadvertently discovered that their art form can help teach people how to better communicate with those with dementia.
Meanwhile, enjoy your time in London.
PS: there’s a whole school of therapy for people with dementia called “validation therapy,” based on the premise that first and foremost, the loved one must be willing to suspend his or her own reality and accept the terms expressed by the person with dementia. The movement’s founder, Naomi Feil, claims:
“A validation therapy practitioner is able to step into the world of the old person and have empathy, clear themselves out of their own emotions, in order to feel the emotion of that old person…. The practitioner…sees that person where they are at that moment, and accepts them where they are at that moment…. You can’t fix people up. You can’t change them. But you can accept them just the way they are.”
For more, watch the interview with Naomi Feil, creator of validation therapy: